Something's Lost and Something's Gained

Losses Come Early

If I can keep this pain alive
the outrage will sustain the hope
and I’ll survive.
But if I learn to softly sigh
at your indifference,
then I’ll die
--Carrie Hyde


The changes and losses brought about by declining health include social and financial losses, as well as loss of family role and changes in relationships. Death is often perceived erroneously as a specific moment in time when the body’s processes cease. The last heartbeat, the final breath. It’s true that the end of life is a dramatic and defining passage—but it usually doesn’t happen in a matter of moments or even hours. Rather, death is an event, like birth. And that makes the process of dying more like the lengthy process of growing.
Taking this idea to the next step, consider that when you came into the world, you had to develop the knowledge and skills necessary for survival. You learned to walk, communicate, control some of your bodily functions, and focus your mind. You saw the world as a fascinating place. You engaged with the world and with those around you with unbridled enthusiasm. Everything was wonderful.

The skills you developed, the relationships you formed, the gratification you took in your achievements all served to encourage your attachment to the world.
Dying is the same process—in reverse.

Your loved one will lose power and influence in the world. He will lose many symbols of his achievements. He will lose many family and social roles, some very cherished. He will eventually lose the relationship to his body. We will talk more of this in the season of October & November.

Each of these losses and events cause your loved one to withdraw from physical life, to detach, to divest. It has been said that all of the world’s pain comes from holding on to that which must be released. In the normal process of disease, the moment of death is preceded and in some ways, defined by this series of smaller, cumulative losses, each one serving to loosen one’s hold on life. Remember this concept and hold it in your heart as you consider the range of losses your loved one must endure until he takes his final breath.

Loss of Social Role

As the process of dying unfolds, more and more energy must go into maintaining physical homeostasis–the body’s innate urge to maintain healthy balance and ultimately, life. Very quickly, few energy reserves remain. Activities your loved one once enjoyed must be relinquished.

As illness chips away at his energy, your loved one’s place in the world becomes smaller and more uncertain. Progressively, he may retreat more and more from the external world, perceiving himself as a smaller presence in that world. Sociologists term this social death.
Throughout life, most people form strong social bonds with friends, extended family, at work, in church, with school chums, and with people no one else even knows about. All of these social attachments will be severely strained. Some people can cope well with the issues surrounding dying and are sources of great support. Remember that people are different in their abilities to cope with these issues. Keep the following in mind:

· Many people are afraid of death–their own death and that of their loved one. They may not be able to be there for their loved one in the way they or the loved one had hoped. This is not a reflection of their love (or lack of it). It is only representative of their abilities and limitations. Remember that they too have to deal with this loss. Sometimes there is more than you know going on, and they are not particularly willing to share with you. But they want to participate in the caring for your loved one and their friend on their terms, as much as they can.

· Many of your loved one’s friends want to help, but don’t know what to say or how to act towards you as the caregiver. Do you want to talk about the illness? Would you rather be distracted? The truth is that your wishes, as the caregiver, about this may change daily–even hourly. You will have to let your friends know what you need and that your needs and those of your loved one will change throughout this experience. The most important quality they can bring to this situation (besides their love) is their willingness to be flexible.

· Some people are not talkers. Some people are chore-oriented. They can drive your loved one to the doctor, help with the laundry, bring food and walk the dog. But they can’t always articulate their feelings well. Their gestures are the evidence of their love and caring. It may have to be enough.

With that said, the sad fact is some friendships may fall away when your loved one is dying. They may not be able to cope and may choose to abandon the friendship. None of their reasons, however understandable, can mitigate the pain of a friend’s abandonment. This is a tough situation for everyone.

Finding Friendships at the End of Life

Be alert, too, for the miraculous friendships that have been there all the time. Sometimes only a crisis a large as death can uncover a loving relationship that has gone unacknowledged for years. There are Angels among us, as Leonard learned just in the nick of time.

LEONARD

And then a strange thing happened.
For where the tear had fallen,
A flower grew out of the ground.
--Margery Williams

Leonard was a quarrelsome gay man who lived in a tiny studio apartment in the North Beach section of San Francisco. He was prideful. He was fastidious. He was opinionated. Sometimes he was a pain in the neck. He was always entertaining. Leonard was an interior designer with a flair for colors and a special love of antiques. His apartment, though small, was beautifully appointed. He had lived in the same art deco building for over thirty years.
When Leonard had been a young man, new to San Francisco, he had been prominent in the burgeoning gay social scene. He hosted intimate dinner parties for his friends in the arts and the theater. He had “partied his way through the seventies,” with a dizzying number of sexual and romantic partners. He had never connected with a permanent life partner. “It never seemed important,” he said.

In the mid-eighties the sparkling lifestyle of San Francisco’s gay community came to a halt. The specter of AIDS had cast a shadow of sorrow and pain and great fear throughout the city. The bathhouses closed, parties stopped, the bright lights and burlesque charm of the Castro District began to feel garish and desperate. Gaunt, wasted men haunted the sidewalks. AIDS hospices sprang up throughout the City.

The conversations in cafes were hushed as men spoke in whispers about T-Cells, AZT and medical marijuana. By the time Leonard was diagnosed, he already had full blown AIDS.
We would sit in large antique rockers in Leonard’s front window the spring of 1991. We sipped Earl Grey tea and gossiped about the people who passed the window on Broadway. Occasionally, Leonard would share some tidbit about his life.

Leonard’s health was failing rapidly. The social worker, Nancy, was trying to help him formulate a care plan that would allow Leonard to stay in his beloved apartment until the end. He received practical support assistance from the Shanti Project, San Francisco’s premier AIDS assistance agency, and he had weekly visits from Visiting Nurse Association. A friend or neighbor who could oversee Leonard’s care on a daily basis was needed. Leonard was an intensely private man. For all his socializing and philandering, he had no close friends.
“What about your neighbors?” Nancy asked. “You’ve been in this building for over thirty years. Surely there is someone here who could help you.” Leonard shook his head.
“No,” he insisted. “There is no one.”

Nancy knew that Leonard had an upstairs neighbor with whom he was friendly. He had watered her houseplants when she was on vacation.

“What about the lady upstairs?” she asked him. “Didn’t you say that she has lived here almost as long as you have?”

Leonard was horrified. He exclaimed. “She’s British, for the love of God. If she knew that anyone in the building had AIDS she’d be on the next plane for London. No. My only hope is to stay out of the hospital.”

But Leonard was not able to stay out of the hospital. He developed pneumonia and spent almost a month on a ventilator. By the time he was finally extubated, Leonard’s weight had plummeted to under one hundred pounds. He did not have the strength of get out of bed.
“My only hope,” he told Nancy, “Is to get strong enough to go home.”

That, also, was not to be. Leonard went from the hospital to a nursing home. He struggled valiantly against the ravages of his disease and worked daily with a grueling regimen of physical therapy. Leonard’s strength did not return. Finally Leonard looked at Nancy and said slowly and sadly, “Now I have no hope.”

On Easter Sunday 1991, Nancy sat at Leonard’s bedside and read to him from a children’s book she had brought, The Velveteen Rabbit. It is a story about death and resurrection. Leonard listened patiently and, when she had finished, he smiled weakly.

“I don’t get it,” he said. “I like it. I just don’t get it.” Nancy tried to explain.
“Its about hope, Leonard. Hope for new life. For better things to come . Do you remember hope?”

Leonard could only shake his head sadly. “No,” he whispered hoarsely, “I have no hope.”
Soon after this conversation, Leonard was transferred to a hospice house. He never saw his home again. His possessions were sorted and disposed of by strangers. It looked for a while as though Leonard was right. As though all hope was gone.

The people at the hospice house were kind. Leonard had a small room there which we crammed full of the things he treasured most. As the days passed, spring became summer and Leonard slumped into a near-death stupor. He had stopped eating altogether with one exception. Leonard loved chocolate fudge ice cream. Twice a week Nancy visited Leonard, stopping on the way at the ice cream parlor for a pint of Ben and Jerry’s chocolate fudge. She would sit at his bedside, spoon -feeding him the ice cream, occasionally reminiscing. But more and more the time they spent together was silent.

Nancy was vaguely aware that Leonard had another visitor in the afternoon. It was Dorothy, the British woman from his apartment building. Dorothy had noticed Leonard’s absence from his apartment and she had somehow found him here at hospice house. One day Nancy ran into Dorothy coming out of Leonard’s room. Nancy asked how she had known to look for him at the hospice.

“I always knew about the AIDS,” she said. “How could I not know?” Then she said something Leonard overheard and which completely reframed his life.

“He took in my newspapers and gathered my mail last summer when I went home to England. Leonard has been my friend for almost thirty years. I love him. He is my best friend.”
Leonard was very weak. Far too weak to be his sardonic self. Too weak even to speak. Occasionally, he would pick up a pencil or pen and try to draw--a holdover from his days as an interior designer. The last time Nancy saw Leonard there was a picture on his night table that he was working on. It was a pencil drawing of a hill and a plant and a small elfin figure.
“How cute!” she said. “It looks like a spring time scene.”

Leonard touched her forearm and tried to tell her something, but the words didn’t come.
“Don’t waste your breath,” she told him. “You can tell me about it next week.”
Leonard looked irritated and frustrated with her. Perhaps he knew that they would not see each other again.

Nancy got a phone call the following Monday that Leonard had died.

“He left something for you,” the nurse told her. “A picture he was working on.”
When Nancy went to the hospice to pick up the picture, it was obvious that Leonard had been drawing the Velveteen Rabbit. That’s what he had been trying to tell her. Leonard had found friendship and love in the midst of his detachment. Leonard died with hope. The bitterness of his life was transformed by the discovery that he had been loved from the beginning.
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